31 for 21 Post #1: What's in a Name

Everything Happens For a Reason. You’d think I was some kind of cloying, insufferable Pollyanna with a blog named that. I guess I can be, (I got called spunky the other day-that was a first!) but I can also be moody, sarcastic, dark and mean. Can a person be both negative and hopeful? Because I think that’s me.

I named my blog that, because that is sort of my mantra for life. With my journalism background, I am constantly asking questions. Why? What’s the meaning behind that? Why is that so? What I’m learning is that sometimes there is no answer.

As the old Yiddish proverb says, “We make plans, god laughs.”

***
As regular readers of my blog already know, my mom died of colon cancer eight years ago when she was 49. In the months and years after she died, I felt some sort of stupid shield, a protective cloak, covering me. As though Bad Stuff is somehow doled out in this world in equal portions, as though my mom wouldn’t let anything bad happen to me ever again. After all, I met my wonderful partner only a few months before my mom died. I thought that somehow, my mom had helped Erin find me. That even though my mom had died, everything else was Going To Be OK. I’d had my One Bad Thing happen. I was safe. What can I say? I was young.

And then Leo was born. And I saw my perfect, screaming, wriggling, red-headed baby boy held up in front of me. And I was so relieved, because there had been a scary emergency c-section and some very tense moments. But he was finally here and everything was OK.

And then three minutes later the attending pediatrian leaned over and told me our baby boy most likely had Down syndrome. And then I wanted to die.

How was it possible? How could something so unspeakable happen to me again?

We all have challenges in life, but some people seem to get bigger servings (and don't get me wrong, in no way am I implying that Down syndrome is unspeakable-if anything I've learned that in the grand scheme of "awful" things, Down syndrome is practically like winning the lottery).

I have no explanation for why certain things happen, I can only chalk it up to “everything happens for a reason.” Does it sound passive? I don’t think so. In my journey through the not so wonderful (as well as the many wonderful!) things that I’ve experienced in my life, I am trying to find the meaning behind them, but I am also learning to accept that some things just Are.

When we found out Leo had Down syndrome, I did not feel “blessed” with an extra chromosome. I felt robbed of the perfect baby I was expecting. I felt furious at all the people in the hospital that day who got to hold their babies while mine was being stabbed and tortured in the NICU. I did not feel that Leo had “chosen” us because we could “handle” it. No, I felt like the unluckiest, cursed person. I felt like at some point I must have done something very awful, for something like this to have happened. Mostly I felt that nothing would ever be OK again.

Of course, I’ve come a long way from those dark first days and months after Leo’s diagnosis. When people told me it would get better I couldn’t imagine how. Now I know.

Is there a “reason” Leo has Down syndrome? Is there a reason the little egg that he was was a little sticky on that November day when he was conceived in a fertility specialists’ office on Madison Avenue? We’ll never know. And it doesn’t matter.

What matters now is that Leo, now four, brings a smile to nearly everyone he meets.

And this is what else I know about Leo: A group of people who work at the Trader Joe’s we frequent stop working when they see Leo so they can get hugs (I know, we’re not supposed to encourage this but it’s so hard-Leo was born to hug). Leo hates to see other children cry and is usually the first to console a peer with a stuffed animal and a tender hug and pat on the back. He eats vanilla ice cream like it’s an endangered species and he’s the only person I’ve ever met who can smile and whistle at the same time.

And what I know now, that I didn’t know on that gray, insufferably humid, July day that Leo was born, is that no one is perfect and yet at the same time, we are all perfect. Because we are all exactly who we were meant to be. With all our faults, our bad habits, all the things we don't excel at (I for one am a disaster at math and complicated science and don't even get me started on my inability to put even the simplest piece of "some assembly required" furniture together). And that's just the beginning of my faults.

No, Leo doesn’t have the “right” number of chromosomes. It breaks my heart to think there are people who look at him as a "mistake." Sure, he didn’t sit indepently until he was ten months old. He didn’t walk until he was two. He can be as stubborn as a donkey and he’s stronger than a college wrestler (try getting him upstairs when he doesn’t want to go to bed). But he’s perfect.


Leo, a few weeks old, August 2004

Leo, age four, August 2008

Leo is perfect, just as he is.